Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review
Bibliographic record
Abstract
BACKGROUND: As patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access. OBJECTIVE: This paper presents the protocol for a scoping review of different stakeholders' (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents. METHODS: This scoping review will be conducted according to the Arksey and O'Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents', children's, and adolescents' online access to the electronic health records of children and adolescents? Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review. RESULTS: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal. CONCLUSIONS: This is, to our knowledge, the first study to map the literature on the use and experiences of parents' and adolescents' online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/36158.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.147 | 0.115 |
| Meta-epidemiology (narrow) | 0.005 | 0.006 |
| Meta-epidemiology (broad) | 0.008 | 0.012 |
| Bibliometrics | 0.016 | 0.013 |
| Science and technology studies | 0.007 | 0.005 |
| Scholarly communication | 0.008 | 0.009 |
| Open science | 0.006 | 0.009 |
| Research integrity | 0.011 | 0.008 |
| Insufficient payload (model declined to judge) | 0.069 | 0.017 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".